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The Interplay of Kate’s Rational and Intuitive Abilities

There are many things that Kate has forgotten. Most of those involve her rational thought processes.  I’ve often mentioned that the names of people and places probably top the list. This doesn’t mean that they are permanently forgotten. That depends on how well she has known the people or places before and how often she is still in contact with them. Names of people she hasn’t see in a while are gone though she often recognizes the names when I bring them up. She doesn’t always remember our children’s names or that we even have children. As I have said before, she sometimes forgets my name and her own. The same goes for all of the restaurants we visit on a weekly basis. We have eaten at Casa Bella for at least 45 years, but she usually fails to remember the restaurant’s name. She no longer remembers that we live in Knoxville. The same is true for her hometown of Fort Worth.

As I said in a post a few months ago, forgetting a person’s name doesn’t mean that one has forgotten the person. People with dementia continue to hold many of the feelings they have for people. Our emotions, which arise from our senses, continue to guide us in situations where we can’t remember the associated names. This involves intuitive abilities. I recall my mother’s telling me she didn’t have a family. I asked about her son. She told me she didn’t have a son, she responded to me in just the same way she always had. I can hear her now when she said, “You’re such a nice boy. You always were.” You may be thinking, “This doesn’t make sense.” I would say there is much that doesn’t make sense from a rational standpoint.

Despite the weakness in her rational thinking, Kate still thinks at least some of it matters. For example, several months ago when I mentioned the film Darkest Hour., she wanted me to tell her about it. When I said it was a WWII movie in which Churchill played a major role, she wanted to see it. She loved the movie, but I know she couldn’t have understood much of it. I am equally sure that she was able to experience feelings about it. She knew it was about the war. She still has strong feelings about historical events and people even though she would never remember the names or events without any prompting.

Last night while I was watching the PBS Newshour, she worked jigsaw puzzles on her iPad. Late in the show they had a segment on sex trafficking. As they talked with parents about their daughters who were victims of this crime, she audibly reacted with disgust. She wasn’t even watching the TV. She was sitting across the room eyes focused on her puzzle. Her ears picked up the audio, and she understood enough to react to it.

Another way in which she seeks to stay in touch with rational thought occurs on a daily basis. She asks me to tell her the names of people and places. She feels it is important to remember. She rehearses them, but they are quickly gone. When I have the news on in the car, she frequently asks me to explain what they are talking about. This is a big challenge because most of my explanations are delivered in more than a sentence. Before I get to the point at the end, she forgets what it was that came before. Thus she doesn’t understand what I am saying. Then that I do what I should have done to begin with. I try to express in a single, simple sentence what the issue is. That takes care of it. My point is that she still has an interest in things that are happening in the world and around her. She tries her best to understand and remember. I feel that that she can’t ever achieve her objective. Fortunately, she doesn’t appear to experience much frustration over it.

She is trying very hard to be more organized. Most of this involves getting out the clothes she is going to wear. Often this occurs before she gets ready for bed as she did last night. She walked into the bedroom with pants, two tops, and a pair of shoes. I noticed that she didn’t have a night gown and asked if she would like me to get one. She did. When I brought it to her, she put it in her arms along with the pants, tops, and shoes. Then she asked in a whisper, “Are we staying here tonight?” She has asked this question quite a few times before. It illustrates a breakdown in her rational thought. At the same time, she is working to be more in control of her life which requires her rational abilities. It is common for her to take the clothes to the bathroom where she takes her shower and forget she has done so. Then she goes to her closet and gets something else.

A related example is her desire to create photobooks of our family like the ones her brother Ken has done. She hasn’t done any actual work on a book in more than two years. On the other hand, it is not uncommon for her to tell people she is working on them. Frequently when I mention something that we have experienced during our marriage, she will say, “Remember that. It goes in the album.” It is something she remembers and has a strong desire to do. It also requires a lot of rational thought to accomplish that task. She will never make her album, but I think she gets some satisfaction by thinking of it as an ongoing project of hers.

As I hope you can tell, there is still much about Kate that is like it was in the past. She wants to live as she did before, an impossible challenge.

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Some things disappear. Others show up. Kate’s esthetic ability is still working.

It has been seven and a half years since Kate was diagnosed. Over the past four years or so, a lot of things have disappeared. Some things have re-appeared. Others have never turned up. Occasionally, things that have been intentionally stored away have suddenly appeared. That happened just yesterday.

Late in the afternoon or after we returned from dinner, I noticed that there was a display of old catalogs on the table next to my side of the bed. I should have recycled all of them originally, but I had put them in a drawer of the table and quickly forgot they were there. Previously, I had a clock radio on the table. It had broken, and I disposed of it. The table looked pretty bare. It was obvious to me that Kate had gotten into the drawer and found the catalogs. She didn’t look at them as something to be thrown away. Instead she thought of them like magazines one might display on a coffee table in a family room.

As I was leaving the room, I noticed something else. She had found a basket of Christmas ornaments and put them beside a bench in our bedroom. She must have found them in a closet and was attracted by them. She wanted them where she could see them. That made me think of a couple of other things that have shown up recently. One of those is a change purse decorated in needle point. It has nothing in it, but she found it somewhere in the house and has been keeping it on the table by her bedside. Sometimes she takes it with her in the car. She found another one and does the same with it. I may have mentioned that she found a book that she must have liked. I know that I have seen her looking at the book cover, and she has taken the book in the car before.

This caused me to think about The Dementia Handbook once again. You may remember that the author distinguishes between our rational and intuitive (via our senses) abilities. Her main point is that we should deal with people with dementia by de-emphasizing the loss of their rational abilities and focus on their intuitive ones. The latter last much longer and provide the person with much pleasure.

This makes me look differently at her collection of things that have been in closets and on shelves. She still has much of her intuitive abilities. She appreciates beauty, and I think she sees beauty in lots of little things around her. Some of these are things that she purchased in the past. She is reconnecting with them. There is often little practical benefit to her now. She doesn’t carry money or ID to put in a change purse. She just thinks it’s pretty. That’s enough. She derives her pleasure from holding it, looking at it, and having it around. Although there are still mysteries as to why she was digging around the house for different things in the first place, I think I understand why she picks out some things. They are things for which she has a special feeling. That comes from her intuitive side.

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The changes are gradual, but noticeable.

Yesterday I checked on Kate at 10:30. She had gotten up but had not yet showered or dressed. Not long ago, we would have been at Panera. It was after 11:30 before she was ready to leave, so we went straight to lunch. This has occurred with increasing frequency over the past few weeks. A number of people at Panera have asked where we’ve been. I’ve told them we’re sleeping a little later lately.

It was late April or the first of May that her sleeping pattern began to change. At that time, I wondered if this could be a sign of some overall change that was taking place. I also considered the fact that she was taking Trazadone. It is often given as an aid to sleep. After consultation with her doctor, I took her off of it. On the whole, I believe that helped a little. I do believe she is sleeping fewer hours each day. Before taking her off, she usually slept 12 to 14 hours. Since then, the time she wakes up has been more erratic. I would say that she sleeps 11 to 13 hours but occasionally as long as 15 hours. For a long time, I haven’t made any commitments before noon. Now I feel more comfortable if we don’t have any before 1:30. For example, her doctor works out of two offices. One is a good bit closer to us. I have changed her appointments to the farther distance so that she can get a 2:00 appointment.

There are also some days when she sleeps late and then naps again in the afternoon. That happened recently on a day when we had a sitter. She had slept until almost noon. The sitter said she slept another two hours while I was gone. When we returned from lunch yesterday, she went directly to bed and rested almost two hours.

I have been especially sensitive to her sleep routine because I lost a friend who had dementia last year. He was progressing about the same as Kate. After we last saw him, he started sleeping more and died a few weeks later. That may be an unusual occurrence, but I took notice of it.

Kate’s changes are more than just her sleep. As I have reported in other posts, she often picks up items of clothing to take with her when we go out. They are never things that she might need. In most cases, she hasn’t said anything to me about why she is taking them. I don’t ask. I learned a long time ago that she can’t explain why she does things. As we were getting ready to leave for lunch, she said, “I have an extra pair of socks (in her hand). Should I take them?” I said, “I don’t think you’ll need them. Why don’t you leave them here.” Sometime in the past week or ten days, she asked the same thing about some other item. I gave her the same response that time. Otherwise, I just let her bring whatever she has to the car. Normally that is where it stays until I bring it back in.

She has a particular attraction to socks. She often gets out two to four pair of socks to wear even if she doesn’t take them with her. I find them in various places around the house. She has also been exploring closets and drawers that she doesn’t normal check. This morning she got into a closet where she keeps her dressy attire. I keep several tops in there so that she has something appropriate when we are going to a special event. She picked out a very attractive top I had bought a couple of months ago. I didn’t say anything. She looked great, and it’s a top that is multi-colored and won’t show stains. While she was sleeping, I noticed that the bottom drawer of my bedside table was open. Then I saw that she had taken out a small cassette recorder and a charging cable and left it on the bed.

More significant is her change in dependence on me. She is asking for and accepting my help more frequently. It wasn’t long ago that she was regularly declining my hand when going up or down stairs or curbs. Now she often accepts and frequently asks. Its kind of cute the way she asks. As I step off a curb, she’ll simply say, “Hand.” She doesn’t say it sternly. It is a gentle request for my help. She does something similar when dressing. It’s almost like a little chirp. She says, “Help.”

I have been well aware that people with dementia need help dressing, but I never really thought about it much or understood what the problem was. Now I am learning. Getting pants and tops on so that they aren’t backwards or inside out is more challenging than I realized. There is also the problem of the sequence or order in which you get dressed. On occasion when I observe her dressing, I am struck by how much concentration is required for her to figure out what she should do next. Sometimes she just has to call, “Help.” The interesting thing is that this has occurred so gradually that she doesn’t seem to express any frustration or irritation that she has to ask for my help. She is very comfortable asking. She doesn’t do it all the time. She is still picking out her own clothes most of the time.

Of course, one of the most noticeable changes are in her memory. The fact that she asks my name more often is among them. When taken together, all of these things make it clear that our lives are becoming very different. Change brings with it a lot of feelings. At Broadway Night at Casa Bella on Thursday, they sang a song I had never heard, “Happy/Sad.” That seems to be where I am right now. I’m happy for all the good times we have had and will continue to have, but I’m also sad as I contemplate the changes taking place.

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Good Morning.

One of my friends used to say that two of the most underused, but important, words are “Thank You.” I’d like to make up for that this morning by thanking you for being here. I am very unclear about how many of you are out there. I do know that some of the people I am closest to check in from time to time. There are quite a few others I don’t know at all. I have two counters that are supposed to tell me the number of visitors, but they give me such different numbers that I don’t know what to believe. It appears, however, that about half of the visitors are from the United States. The rest represent about 25 countries.

I started this journal the day of Kate’s diagnosis on January 21, 2011. I did it because I wanted to document our story. I didn’t have any immediate plans to make it public. I thought it might some day be of some interest to our children. As time passed, I began to think our experiences might benefit others as well. I don’t consider myself to be a writer, and my journal became too big for a book. That led me to think about a blog. The good thing about this format is that people can read as much or as little as they want.

What I didn’t anticipate was how I might feel as the blog unfolded. I’ve spent the better part of my adult life avoiding every opportunity to write. I didn’t anticipate that I would feel any obligation to make regular posts; however, I know that some of you are checking in at least periodically. Occasionally, that causes me to feel a little bit of pressure to write something every day. When I skip a day, it sometimes crosses my mind that you might wonder if everything is all right. At least one person has asked me about that. I intend to stick to my original plan. That is, I’ll write when there is something that I would like to have “on the record.” If I don’t have anything, I’ll wait until I do.

One of the things I can’t predict is how the rest of Kate’s journey will unfold and how that might affect my writing. If you’ve been here before, you know that we’ve been very fortunate. I don’t mean to minimize what I feel is the hardest part for me as a caregiver – the sadness I feel as I watch her gradually lose so many of her abilities to do everyday things. I have found, however, that she and I have adapted very well. The biggest surprise of all is that we are able to continue living what I think others would think of as a normal life. As a reader, you know that is far from the truth. What is the truth is that we really enjoy ourselves in the midst of the most difficult struggle we’ve ever faced. We are quite active, and we enjoy each other as much or more than at any time in our 55 years of marriage. What more could we want? Well, we could want Kate’s diagnosis to have turned out to been an error. We know that’s not possible. Our approach from the outset was to make the most of whatever time we have left. We’re doing that now and plan to continue that as long as we are able.

Thank you for being a part of our journey.

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A Quiet but Nice Day

Kate slept a little later this morning, so we didn’t get to Panera until just after 11:00. Then Andriana’s turned out to be busier than usual. That meant it took a little longer for lunch which actually worked in our favor. This has been one of those days when Kate has asked more questions about our family (her father’s name, my father’s name, our children, and where we live). I took advantage of that time to reminisce with her. I was partially motivated by her anxiety attack week before last. That night she didn’t know who she who or where she was. Since then I have been trying to give her a little more information about her and her family.

Today’s conversation dealt largely with our attendance at so many live performances since our first date to Handel’s Messiah. I reminded her that we began our 50th anniversary celebration with a trip to New York City during the Christmas season where we attended Messiah at St. Thomas Episcopal Church.

Then I gave her a Cliff Notes’ summary of other performances we have enjoyed since we married. Most have involved musical theater. The first Broadway and Off-Broadway musicals we attended were on our first trip together to New York in 1967. We saw the original productions of Man of La Mancha and Cabaret. Since then we have seen as many as 30-40 shows there and many more here in Knoxville. We have also had season tickets to the Knoxville Symphony for 30 years. We haven’t generally attended some of the more popular entertainers, but we have been to concerts by Louis Armstrong, The Mamas and the Papas, Gloria Loring, Eartha Kitt, Jimmy Buffet, Marvin Hamlisch, Bette Midler, Billy Joel and Elton John, Tony Bennett, Paul McCartney, Art Garfunkel, and Willie Nelson. Opera has more recently entered our lives but is a favorite. We’ve enjoyed opera at The Met in NYC, Vienna, Berlin, Amsterdam, Zurich, and Sydney as well as quite a number of the Live in HD at The Met performances broadcast live in local theaters.

I went through these things knowing that she wouldn’t remember many, if any, of the things we had done. She does, however, remember that we have attended lots of events like these. More importantly, she was very attentive and seemed to enjoy my them bringing up. At the end of our reminiscing, she noted how fortunate we have been to have had so many good times together. I agree and will cherish the memories when we are no longer able to share them.

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Remembering Mom

Today is my mother’s birthday. She died in 2002, four years after her doctor told us she had dementia. I remember how carefully she presented the news. There was no problem for my dad and me. We had recognized it for some time. I wish I could remember how long we had known. Looking back, I suspect Dad was aware of it when they moved to Knoxville in 1994. He had been having his own health problems. I suspect he may have been concerned about what might happen to her if he were incapacitated. I’ve had similar thoughts about myself although I’ve been fortunate not to have had signs of health problems.

Two things I do remember. One is that Mom used to comment on her poor memory. She frequently said, “I don’t know what’s wrong with me. I can’t remember anything.” In the early stages, I just thought it was a natural part of her aging. That’s what I thought about Kate as well. Of course, that really is the most likely diagnosis. It takes a while to recognize that it is much more than aging.

The second thing I recall is that Dad kept her busy. I thought he was just getting acquainted with a new city. It was that, but now I think it was more. They were active in a local senior center and worked as volunteers helping with the center’s mailings. I remember Mom’s opening an envelope from the center and showing it to me. She was so excited to receive it. She hadn’t remembered that she had helped with the mailing a day or two earlier. They also delivered Meals on Wheels. Dad may have been doing what I do with Kate, trying to keep her brain stimulated as much as possible.

My mom and dad were also fortunate that she had no special complications along the way. She just gradually lost all her memory. Many with dementia die of other causes. I would say she died from the effects of dementia itself. She finally reached the point at which she could no longer eat or drink.

Dad was a devoted husband and care partner. He cared for her with minimal help. The only regular help he had was from an adult day center where he left Mom on Wednesday mornings while he went to Kiwanis and then to the grocery. My brother, Larry, and I tried many times to bring in help or to move them to assisted living. He was very resistant to say the least. In the end, he did it his way. Mom slept in the same bed with him until a few days before she died. I recall Dad’s telling me that he tied a string from her wrist to his so that he could tell if she got up at night. That has much more significance to me now.

Two or three days before Mom died, Dad was turning her every two hours. His last time was about 2:00 a.m. He woke up at 5:00, and she was gone. She died peacefully without any pain and without the help of pain medication.

Mom always loved her boys. She thought Larry and I could do no wrong. Even  after she forgot who I was, she often said, “You’re a nice boy. You always were.” That’s something else for which I am grateful.

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Kate still enjoys movies (if I pick the right ones).

Kate and I have enjoyed movies throughout our marriage. They’ve been especially important since her diagnosis. It gave us another bit of pleasure that was a complement to our other activities. A little over a year ago, I found that Kate wasn’t enjoying them the way she used to. Not wanting to let go of this source of entertainment, I worked a little harder to find ones that she would enjoy. Ultimately, however, we’ve been going to fewer movies. Recently, we’ve had two successes. The first was RBG, the documentary about Ruth Bader Ginsburg. The second was yesterday, Won’t You Be My Neighbor. It’s another documentary. This one, of course, is about Mr. Rogers.

When you know that Kate hasn’t been able to follow a plot for years, you might wonder how she could enjoy a movie at all. That’s because we can easily fail to appreciate the variety of ways in which all of us derive pleasure from life. Authors like John Zeisel (I’m Still Here) and Judy Cornish (The Dementia Handbook) have sensitized me to the many ways people with dementia (PWD) still enjoy life. I had already observed that with Kate, but their writings have made a great impact on my understanding of why this is true.

In particular, Cornish distinguishes between our rational and intuitive thought. Rational thought deals with the kinds of things we learn from parents, teachers, and many others we encounter. These include the rules of behavior as well as the factual knowledge like language, history, math, spelling, names of people, places, and things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that we underestimate the significance of what we learn experientially. I believe that is a major reason we believe a PWD has lost everything that makes life worth living. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy things like music, art, and interpret and respond to the feelings of others.

I find Cornish’s distinction between the two kinds of thought helpful in my understanding of why Kate can enjoy a movie she doesn’t fully understand. Her ability to think “rationally” has deteriorated substantially. She can’t follow a plot because that requires her to assemble pieces of information to make a coherent picture. On the other hand, she is able to experience things she likes and dislikes. She can formulate an impression of Ruth Bader Ginsburg without remembering that she that she was a good student, that she was a lawyer or a Supreme Court Justice. She obviously liked what she was seeing and hearing about her but wouldn’t recall any of the specific bits of information about her.

Unlike Ginsburg, whom she didn’t recall when going to the movie, she did have some recollection of Mr. Rogers. I am sure it was a very vague memory, but she probably began with a positive feeling about him. The documentary beautifully captures Rogers’ personality and feeling for children. The very sound of his voice communicates this feeling. I have no doubt that Kate could sense this. Of course, the film contains lots of scenes of Rogers with children. She loves watching children wherever we go. Seeing the children in various situations with Rogers was appealing to her. Moreover, the things that he was doing as he interacted with them, as well as his facial expressions and tone of voice all convey important information about him. These are things that Kate could easily understand.

I should make it clear that she hasn’t lost all rational thought. She is able to understand and respond appropriately to most of the things that people say in ordinary conversation. Watching a movie, she hears and usually understands what is said; however, it is gone in seconds. That keeps her from understanding many of the events that follow. The trick for me is to select a movie that contains people and events that she can enjoy simply because of the qualities of the people and events she is seeing and hearing without having to understand “the facts.”

That is particularly easy to grasp with documentaries like RBG and Won’t You Be My Neighbor. It may be less obvious for a film like Darkest Hour. That is another movie she liked. In that case, I know that before entering the theater, she recognized that Churchill was a person of historical importance and that WWII was a major event in our lifetime. What she saw and heard in the movie conveyed that as well. Without understanding any details about Dunkirk, she was able to identify with the film emotionally. That continued ability to enjoy life experientially has allowed us to maintain our quality of life even as she loses her rational thought. I am grateful for that.

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Feeling Grateful on Father’s Day

When we get to a certain age (not sure when that is, but I must be there), we begin to reflect a bit on our lives, people we’ve met, things we’ve done, places we’ve been. That takes us to how we feel about ourselves. When I do that, I always think of one word that sums it up for me – Grateful. Yes, I am grateful for many things.

I’m grateful to be alive. When I was twelve and some time thereafter, I thought 60 was very old. I knew that I would never live that long. That bothered me because I wanted to live to see the turn of the century. When I was older, I no longer worried that I wouldn’t make it. I was still here. When my dad celebrated his 100th birthday in 2013, my optimism about my longevity took a leap forward. Now it’s 2018, and I don’t believe I am likely to depart this world anytime soon. I am very mindful, however, that life is uncertain. Kate’s diagnosis with Alzheimer’s in 2011 keeps that in the forefront of my mind, but I am very grateful to be here today and enjoying life.

Since it is Father’s Day, I also feel grateful for my dad. Although I never remember his giving me any advice or admonition about making the most of life, he was a significant role model for me. He had a much harder life as a child than I did yet he never complained. He was always optimistic. I could tell by observing how he dealt with problems that he saw life as involving recurring challenges. His job was to figure out how to conquer them. He loved life and the people he encountered along the way. They loved him back.

Kate and I are both grateful for our families. That includes our extended and immediate families. We have two children who have successfully found their places in the world and are raising children that we expect to do the same. Kate and I want to minimize their responsibilities in caring for us, but I know there will be plenty near and at the end of our lives. I am especially grateful for our daughter’s and son’s skills and sensitivities about the aging process. We will be in good hands.

I am grateful for the opportunities I’ve had to experience the world. That began with educational opportunities but extended to life experiences in different places with different people. I never imagined what lay ahead of me when I left for college. Those experiences have had a tremendous impact on my view of the world.

Many people have influenced my life. Of course, that would include teachers, but goes much further to include people I have studied with, worked with, played with and encountered in brief encounters in everyday life as well as international travel.

As I think of people who have been important to me, I naturally think first of my partner in life, Kate. We’ve often talked about how unlikely it was that a beach boy from Florida would meet up with a Texas gal almost 1500 miles away. We came from very different kinds of families and backgrounds. It turns out that we have shared values and interests that have lasted us a lifetime. My dad couldn’t understand why I wanted to go so far away from home when there were plenty of good colleges and universities in Florida. I loved my family, but I am glad I left for a new adventure. My mom said, “You’ll go out there and meet a Texas girl and never come home again.” She and I were both right. It worked out well.

Kate’s diagnosis with Alzheimer’s wasn’t in our game plan, but we quickly decided we would make the most of our time. I am satisfied that we have done that, and we’re not finished. Even as her memory fades, we are enjoying life and each other. She lives in the moment, and I am living with her. That is what I am most grateful for this Father’s Day.

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Reflecting on In-Home Care

Nine months ago this past week, I started in-home care for Kate. It seems like an appropriate time to take a look at how it’s working. Overwhelmingly, I would say that it has worked well. My biggest concern at the start was how Kate would react to my leaving her. I feared that she wouldn’t think she needed anyone to be with her. It turned out to be a non-event. A few minutes before the first sitter arrived, I told her that I was going to the Y and that I had arranged for someone to stay with her. She looked puzzled and asked why. I reminded her (knowing that she couldn’t remember) that I had mentioned feeling uncomfortable leaving her alone when I was gone and that I would feel more comfortable having someone with her. She said, “Okay.” That was it. She greeted the sitter warmly and never acted like there was a problem. I felt much better about leaving.

There have only been a couple of occasions when she seemed to have had any concern, and it was minor. I think that was because she knew I was leaving and expected that she would be going with me. On one of those occasions, she said, “I always like being with you.”

At first, I think she felt as though she may have needed to entertain the person. After a number of visits, I found that if she wanted to lie down and rest, she did just that. She also seems to like the two sitters we have. One comes on Monday, the other Wednesday and Friday. There have been at least four times that a sitter could not come. Each time the agency was prepared to send someone new, but I chose not to introduce a new person. I know that we will have to do that eventually. Right now, I’m not ready. I like having the consistency.

The two people who are with us are not the same people with which we started. The first week or two we had different issues that led to our not having them return. Since then, everything has worked out well. Kate seems to be happy. I think the sitters are also happy. I think they should be. They don’t really have any major responsibilities other than being with Kate while I am gone. They almost always go to Panera for an hour or two of the four hours the sitter is here. I have a gift card for Panera and have told the sitters they may buy something for themselves in addition to whatever Kate wants. I think they have liked that.

If there is any problem at all, I think I may be it. Rationally, I believe having a sitter is the right thing to do. It is good for me to have some time to myself. It is also good for me to get my exercise at the Y even if I am also walking every morning.  I have never fully adjusted to a sitter emotionally. My problem is that I don’t like leaving her with someone else. I like being with her. I am especially mindful that she is changing. It won’t be that long until we may not be getting out as much as we do now. I want to enjoy every moment that is possible. As I say, I know that rationally I am doing the best thing. I have no intention of going back. In time, I am sure that I will accept this emotionally as well.

I have had one surprise. I misinterpreted the “elimination period,” the length of time that we must pay for the services before long-term care insurance kicks in. I always knew that it was 90 days, but I thought that meant 90 calendar days from the start of service. That would have meant the insurance would begin paying on or about December 8 of this past year. When I called the company to initiate their payments, I discovered that the 90 days refers to the number of days of service, that is, the number of days we actually had a sitter. It looks like that will be in late July, a full 7 months later than I thought. I understand now that some policies do have an elimination that is like I expected, but I am sure it is more expensive. The important thing is that I don’t have a policy like that.

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A Thought on Caregiving

At lunch with the Greens the other day, Angela told me a story of how a friend who was a caregiver for his aunt dealt with a situation all caregivers for people with dementia (PWD) face, what to do when your loved one keeps asking the same question over and over. She said he made signs that he could hold up and show his aunt. I said, “That sounds like something done for the convenience of the caregiver and not the PWD.” She went on to explain that she had heard that having a visual helps the PWD to remember.

Having reflected on this a bit, this approach misses something important. From my perspective, one of my pleasures is being able to help Kate with something that she either can’t do or finds difficult or inconvenient to do. Every time she asks me someone’s name, where we are, or anything else she has forgotten, she gives me an opportunity to do something for her.

I believe one of my greatest privileges is to walk with Kate through these last chapters of her life. I intend to keep answering her questions and to do it happily. These are things she wants to know, and I am glad to tell her. It will be sad day when she no longer asks me questions.